I Usually Deal With Things Pretty Well... But Today, I Just Had To Cry

As some of you may know, in the past few weeks I've had a difficult time breathing and I get out of breath a lot quicker than I used to. I told my doctors about this and they wanted me to do a lung function test. And according the Pulmonologist, my lung function is considerably worse than it was in October. My doctors up in California want me to get a lung CT Scan done to make see if I have something called Pulmonary Fibrosis which can be caused by one of the medications I am on. Honestly, I would much rather have this Pulmonary Fibrosis then the alternative which is - my Pulmonary Hypertension is getting worse because with that, there isn't much they can do. With PF, it is treatable and we may have to do some switching of medication. But that sounds a whole lot better than going to talk about a heart-lung transplant. 
I have noticed though that I am not feeling nearly as bad as I was about a week ago - which is good. Which is kind of what makes this so frustrating. I feel pretty normal, and my quality of life has not gone down hill. So why are my numbers so bad? 

During my doctor appointment, my doctor told me that I have a great attitude about what I go through. And for the most part, I think I do as well. But today, with my mom beside me, I had to cry. I keep it together most of the time, I suck it up and deal with what life is giving me. But I told her today that I just want a break. I just want a break from the doctor appointments, a break from the what-ifs, a break from the medication. But most importantly, a break from my CHD and PH. I told her that I pretty much take whatever life throws at me, and I usually don't complain. I am able to laugh and enjoy most days. I make a choice to do so. And what is so frustrating to me and what is so scary about this right now is that I feel pretty darn good. So why are my numbers so bad? That's what is so frustrating about this whole thing. 

I don't talk to people about the fear, the exhaustion, or how sometimes I just want to cry. There is a handfull of people that I talk about this stuff with. And one of the reasons is, I want to still live every day like a normal person my age would. If I told all my friends and other people in my life about this or what I felt, I worry that they'd ask me more often 'How are you feeling?' and while I appreciate the gesture so much, I don't need to be reminded that I'm sick or that I'm not normal. School is where I go to be like every normal college kid. So I try not to tell people there what I'm going through. I mean if they ask, I'll tell them. But I won't go into great detail and I will most certainly not cry either. Because school is where I can go and do things like a normal person my age would. I don't want that to change. I don't want my friends or my teachers to see me any differently. I just want to enjoy college and be one of the students in the class. 

Hope and Love,
Becca 

14 comments:

  1. Becca you are a remarkable young woman and your attitude is amazing. I know how important it is to live a normal life ans it seems like you are often successful in doing so. Just remember it's ok to feel scared and frustrated and ok to cry. Don't let those feelings eat away at you. Thank you so much for sharing your story with others. As humans we need to know we are not alone and I know others will benefit from knowing you know their pain and their fear. I pray you get the answers you need to get better.

    ReplyDelete
    Replies
    1. Hi Tricia,

      Thank you so much for the words of encouragement. It can be hard at times to not let some of these feelings eat away at me. I feel as if once I get some answers, then some of the fear and uncertainty will go away. But between then and now, there is just a whole of 'I don't know.' and that is what is so concerning. It's always great to hear from you because I know that you know what this feels like and it's always a great reminder that I am indeed not alone.

      Thank you for your love and support,
      Becca

      Delete
  2. Becca, I am so sorry you're facing so much right now. You're right CHD and all its collateral damage stinks, but I agree it is particularly difficult to "be so sick" when you "feel so well". Max went through the same thing right before his valve replacement. His scans, his numbers, everything indicated that he should have been much sicker than he was yet he looked great! It was about that time that we first started to see glimpses of his emotional exhaustion with all you heart kiddos go through. But just like you will, Max picked himself up, brushed himself off and walked himself into the OR (literally). You are a very, very special young lady and your strength is endless, you have so much to teach the younger heart kids. We love you and we're sending lots of hugs and prayers your way! P.S. You are normal, a special normal, but still normal :)!

    ReplyDelete
    Replies
    1. Thank you for all the love and support, it is appreciated more than you could ever know! It is people like you and your family that help me keep strong and to keep going. Your words and the fact that you truly do know what it feels like, it is an amazing feeling to read what you write - knowing that you truly do know what it feels like.
      Love,
      Becca

      Delete
  3. I know what you are feeling. My son feels the same, but he learned when.he was in middle school, his teachers and faculty needed to know. There were times when that was important that they knew what to do in such emergencies. Like times when he collapsed or passed out. They knew but the kids didn't... And he is a grown man now but cries sometimes from.it all. The week before he found out he needed a 7th heart surgery he was with me and told me he felt it was coming, he was crying. He has a young wife and baby to think of. It hasn't been 2 years since his last open heart surgery. He tries to handle this alone, which isn't good. I have been trying to convince him to share his thoughts with a group. I admire you very much and hope you will see him on.your Facebook soon. He holds too much in. A blog would be good.

    ReplyDelete
    Replies
    1. Hi,

      I agree, all my teachers and my friends know about my health needs. Every new semester, I e-mail my professors about my health issues and I even have Disability Resources write something up for me. I think it's responsible and necessary for me to do this, in case anything should happen during school hours.

      Handling things like this is hard on yourself but it is also hard on your family because they know you are suffering and want to help you, but have no idea how to. If your son ever needs someone who understands what it feels like, he can always come on here and vent to me. Us CHD'ers gotta stick together.

      Love,
      Becca

      Delete
  4. Oh my God, Becca, you are so strong and you are practically my role model, because, the fact that you can share all this makes you a hero. I can assure yo that everything is going to be fine with you. God will guide those doctors and God will guide you. Your story is so inspirational. I think you should just keep on keeping on. It is okay to cry sometimes, but do not let those emotions rule you. Take control of them and remember all the good things you have been blessed with like friends, a close-to-normal college life and so on. You will find yourself smiling more often. HOPE AND LOVE

    ReplyDelete
    Replies
    1. Thank you so much! Your reply made me smile the moment I read it. I can't thank you enough for this amazing comment!

      Just curious, do you know anyone who has CHD or a chronic illness? If you don't mind me asking that is.

      Thanks again, your words mean so much to me!
      Becca

      Delete
  5. Hello dear friend!

    Pease know you are loved beyond measure....I think of you often and miss your light, which shines when you smile!
    I am holding you in prayer.XO

    ReplyDelete
    Replies
    1. Thank you Lorilee! I appreciate your thoughts and prayers so much!

      Delete
  6. I'm praying for you, my sweet friend. You are amazing.

    ReplyDelete
    Replies
    1. Thank you Claire! Love you lots!

      Delete
  7. Becca~ My name is Jen, I am 41. I was also born with TOF along with several other "cardiac abnormalities." Last year due to Tricuspid Stenosis I underwent my 3rd Open Heart, a Bio-directional Glenn and my 5th pacemaker implant. I empathize with what you are going through. Along with being Chronically Ill, our normal is perhaps abstractly unique. There is nothing wrong with wanting to be "normal." but the truth is were not. You have to be willing to stand in acceptance in order to advocate for yourself throughout your lifetime. You are the only one who knows how you feel and what you can do, it's strength to know your boundaries. The courage in which you have to battle is the same courage that allows you to stand in that space.

    Peace, Strength & Hope
    Jen

    ReplyDelete
    Replies
    1. Jen,

      Thank you so much for your kind words!

      When I was little, I would occasionally ask my mom "Why aren't I normal?" or "Will I ever be normal?" and as I got older, I realized that I'd never be the normal like most people are. But I found my own type of normal and I've been okay with that most of the time. My life for the past several years actually have been quite normal for me. Not a lot of complications health-wise and my quality of life has been good. So now that I could possibly be very sick again, when I wish for a normal life... I'm actually not wishing for what other people might consider normal. But the normal that I've had for the past few years. I have grown to love and enjoy my uniquely normal life as you called it.

      Thank you for writing me. It is always great to come in contact with another CHD Fighter! I hope we stay in touch!

      Hope and Love,
      Becca

      Delete

Hey guys! Feel free to comment and share a story!

Follow by Email

 
My Life As A Chronically
Ill Young Adult
Blog Design by Ipietoon